Friday, April 18, 2014

5 Challenges & 5 Small Victories

I'm really excited to be participating in the WEGO HealthHealth Activist Writer's Month Challenge. I'm hoping that the challenge factor will motivate me to write more often (every day this month, in fact!), and that that will develop into a habit of writing regularly after the month is over. More importantly, I'm hoping that by sharing my experiences, thoughts, and insights about living with chronic and invisible illnesses, I'll be able to bring comfort to someone struggling with the same issues.

*Note - I'll be including this introductory paragraph at the beginning of every post, so that anyone who's checking in will have that background info. If you come back another day (and I hope you do), you can skip this part!

Today's assignment: 5 Challenges & 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

Everyone knows that life is like a roller coaster: full of ups and downs, twists and turns, highs and lows. The ride is scary and exhilarating, and most of all, it's best when taken with friends. When that life includes chronic autoimmune invisible illnesses, the lows can be much lower. On the flip side, it doesn't take as much to get the same high, as we learn to appreciate the little things that much more.

Some of the most difficult parts (or lowest lows) of living with my myriad illnesses include:

Lack of understanding. The diseases that I have don't make sense. I can have pain in my knee one minute, and in my shoulder the next. I can pour milk into my coffee, and then feel as sore as if I'd just lifted 100lbs. I can go food shopping, go to the drugstore, drop off the dry cleaning, and pick up dinner one day, and struggle to get from the couch to the kitchen the next. And through it all, I don't look sick. I get that it doesn't make sense, and I can't blame anyone for not understanding what I'm feeling. That said, it still leads to frustrating, upsetting, and even maddening situations. I've written about problems arising at work from the misperception that I am slacking off when I need to work from home because my mind is able but my body is not. When I have to cancel plans (or when I can't make them in the first place), friends or relatives may not understand that it's because I am not well enough to go out, instead thinking that I just don't care enough to make the effort. Worst of all, well-meaning friends suggest that if I only _____ (fill in the blank), I could be back to my old self. What they fail to understand is that I have a number of actual physical diseases that have no cure. This is not simply a result of poor diet or lifestyle choices; I did not do this to myself.

Weight gain. The combination of hypothyroid (slow metabolism) due to autoimmune thyroid disease, inability to exercise due to painful/swollen joints and debilitating fatigue, and medication side effects has led me to gain over 70lbs, making me the heaviest I've ever been. This is surely a hit to my self esteem, but it also brings with it a slew of additional health problems. Most frustrating of all is the catch-22: the doctors say that losing weight will help relieve some of the symptoms, but it's the symptoms (and treatment) that are making me gain weight in the first place!

Lack of accurate diagnosis/effective treatment. All too often, people who have one autoimmune disease actually have quite a few (and perhaps several other conditions that are not autoimmune in nature). This can make diagnosis especially challenging, as the symptoms overlap, and may "negate" other conditions. Though I'd known for years that I had fibromyalgia, one of the things that kept doctors from diagnosing it was that my ankles were swollen. "Fibromyalgia doesn't present like that," they said, so they kept looking for something else. Perhaps they were right: fibromyalgia doesn't always lead to swollen joints ... but it does, however, often present alongside other conditions that do. One does not preclude the other. (About 6 months later, they finally diagnosed the fibro). At that point, the doctor said I definitely had some kind of arthritis, definitely autoimmune, but he was not sure which autoimmune arthritis disease it was. After a few months with no more information, I switched to another doctor. She, too, said some kind of .... Over the next two years, she went back and forth: it's Psoriatic Arthritis ... no, it's Lupus ... no, it's Rheumatoid Arthritis ... no, it's Undifferentiated Connective Tissue Disease. At this point, the most definitive diagnosis she could give was "for all intents and purposes, you can say Rheumatoid Arthritis ... but it's not a typical RA." Looking back at #1 on this list, how could I expect anyone to understand what I was dealing with when my doctors couldn't even tell me what it was? All the while, we'd been trying different medications: pills, creams, injections, infusions, all to no avail. I currently take about 15 pills a day, go for an infusion once a month, and wear a patch for continuous release of medication ... and I'm still in pain every day.

Feeling helpless. I have always prided myself on being strong and independent. I could do anything, and would work even harder if someone told me I couldn't. Now, however, I have to accept the reality that I cannot do many of the things I used to. From opening a jar to climbing a rock wall to working 24hrs straight on an overnight fundraiser event - I have to ask for help, or sit back and watch while other people do these things without me. It was always nice when hubby cleaned the snow off my car so I wouldn't have to; it's a very different feeling when he does it because I can't. As I look for a new job, I have to consider the physical demands and schedule. When we plan a vacation, we have to think about what I'm able to do, and whether the site can accommodate my needs. Even simple household chores are often too much for me to handle, or if I do them, they completely wear me out for the rest of the day.

Pain. Plain and simple, the physical pain is one of the worst parts of living with my illnesses. I have headaches every day: tension headaches, migraines, sinus headaches, cluster headaches - I get them all. My muscles ache all the time, as if I'd just done an intense workout - in my neck, shoulders, arms, back, and legs. My joint pain comes and goes, but I get it in my hands, wrists, elbows, shoulders, back, hips, knees, ankles, and feet. I also get abdominal pain from GI and GYN issues. It varies in location and intensity, but I literally hurt everywhere.

There's a lot about life with health problems that can make us cry, scream, or go a bit nuts ... and if all we did was think about the bad parts, we certainly would. But we are more than our illnesses, and there is much more to life than being sick. In fact, it's the rest of life that makes the hard parts more bearable.

Some of the little, good things (the highs) that keep me going include:

Hubby & Mom. These are hardly little and certainly not things, but they keep me going more than anything else. I've written more about each of them before, but could not let this prompt go without putting them at the top of the list.

New connections. Through facebook, I have found groups and pages dedicated to the various illnesses affecting my life. Through those pages and others, I have been able to connect with other people who really do know what I'm going through, because they are in it themselves. Through our blogs, posts, and comments, we are able to validate each other's feelings, offer advice, and most of all, remind each other that no one has to go through this alone.

Spoonk. It's a weird word, and an even weirder looking item. I discovered this a few weeks ago, and quickly fell in love with it. Spoonk is an acupressure mat that can be folded to use as a pillow, or laid flat to lay upon. It's made of organic, eco-friendly materials (meeting my hippie needs), and has thousands of "stimulation points." I now understand the appeal of the ancient practice of using a bed of nails: it is relaxingt, i helps to (temporarily) relieve pain in the areas being stimulated, and it feels reeeeeally good!

Volunteering/Walking. As noted above, one of the things I hate most is feeling helpless, because there are so many things I can no longer do. Volunteering for organizations such as Arthritis Foundation and International Foundation for Autoimmune Arthritis helps to counter that. I am not just sitting around as a victim of these diseases; I am actively working to raise awareness about these diseases, to advocate for legislation, and to raise funds to support research, education, and programs for people like me. World Autoimmune Arthritis Day is "an online virtual convention aimed to bring global awareness to these diseases in an attempt to differentiate arthritis types and to promote education and understanding." The Walk to Cure Arthritis "raises funds and awareness to fight the nation's leading cause of disability." I am proud to be working for both of these important events.

This challenge. Whenever I get upset or frustrated, writing gives me a positive outlet for that energy. Through this blog, I am able to focus that energy more directly, knowing that I will write about a specific topic, and work through my feelings to end up with a positive outlook. As much as I have always liked to do that, I have gone through long periods of writer's block, not knowing where to begin or what to write about. This writing challenge helps to solve all of that: it gives me a purpose and a deadline. Each day, I am able to write through my feelings about the given topic, but in a way that will (hopefully) offer hope, consolation, ideas, or support to someone else who reads it.

No matter who we are or what obstacles we face, there will be ups and downs in life. What matters most is not what the challenges are, but how we deal with them. If we focus only on the problems, we will surely be miserable and lonely. When we learn to recognize the smaller things, to appreciate them, then we begin to create even more small but good things in our lives. Eventually, they add up, and begin to outweigh the big bad illness that weighs us down.**If you like what you read, tell a friend. In fact, tell me, too - post a comment below! If you don't ... well ... I'm all for honesty, but ... please be gentle!

Meet the Buttahfly

About Kerry

​I'm a glass-half-full kind of girl. More than that, really - I'm the girl who'll point out that if it's not full, you don't have to worry about spilling your drink every time you pick it up!

I am extremely fortunate to be married to my best friend - the boy next door I had a crush on since I was a child. Though we've been married nearly 17 years, people who meet us still think we’re newlyweds … and in a way, we still are! Through thick and thin, sickness and health, he has been my rock, my anchor, my greatest source of strength and support.

Over the past few years, I've been diagnosed with a number of chronic, autoimmune, and invisible illnesses (see What’s Wrong for the details). Still, I do the best I can to stay positive: this blog is my way of showing those with similar experiences that they are not alone. We may not be able to beat (cure) our diseases, but we can make sure they don’t break our spirits. At the same time, I’m hoping to educate our friends and family – those who want to be there for us, but don’t really understand the extent of our illnesses and how severely they affect us. With a little help, we can get through anything … together.

It's my mission to make a difference in people's lives, and I encourage everyone to do that in whatever way possible. A positive word, a helping hand, a donation (of time or money) to a worthy cause, even a simple but genuine smile can mean the world to someone ... and that someone could be you!

🎶We're Jinglin', Baby!

On December 9, I'll be jingling my bells at the Arthritis Foundation's Jingle Bell Run. Join us if you're in the area ... or support our efforts with a donation. Anything you can do would be greatly appreciated!

The Mighty

I've recently had a number of stories published on The Mighty, an online magazine of sorts for people with chronic illness. View my author page (and published pieces) here.

2017 WEGO Health Awards: Patient Leader Hero (Nominee)

“Sometimes the connections we make in online communities go above and beyond, truly changing our lives for the better.” This award recognizes those Patient Leaders “whose content has opened your eyes to seeing things differently … whose dedication has ignited the advocate within you to make a change … whose work has effected change for their community members. This Patient Leader's influence truly has the impact to make a difference. They're nothing short of a hero.” I am truly honored to be nominated.

I Did It!

Every day in April 2014, WEGO Health provided a prompt, and my posts here reflect my responses to those ideas, in terms of living with chronic illness(es). It was a great experience that inspired me to write more, enabled me to “meet” other bloggers and friends, and empowered us all to share our experiences in a unique and creative way.